Why we need to hear from readers and writers with autism

Corinne Duyvis, whose diagnosis of autism led her to start writing and eventually to her first novel, Otherbound, is hosting Autism on the Page throughout Autism Awareness Month in April. She explains why enabling autistic people to share their thoughts on autism representation is important

Corinne Duyvis: ‘I hope that Autism on the Page will help authors write more accurate and respectful characters, and will help readers, booksellers, and librarians recognise both the good and the bad portrayals.’
Photograph: Maija Haavisto

Why we need to hear from readers and writers with autism

Corinne Duyvis, whose diagnosis of autism led her to start writing and eventually to her first novel, Otherbound, is hosting Autism on the Page throughout Autism Awareness Month in April. She explains why enabling autistic people to share their thoughts on autism representation is important

As a kid, I read all the time. During dinner. In the bathtub. Before falling asleep and before getting out of bed. During class. In the car. If I’d been aware of audiobooks, I’d probably have read while biking to school.

Yet, I do not remember ever reading about an autistic character.

If I had, I’m sure the character would have been like those I saw on TV: young boys who barely talked and who screamed when touched. I remember watching Mercury Rising and my mother explaining how difficult touch was for “kids like that.” I was duly impressed. How interesting, I thought.

It’s not that young, minimally verbal autistic boys shouldn’t be portrayed in media. They should be - far better than they are now, as they’re often reduced to plot devices or props to make the surrounding characters look more sympathetic.

It’s just that I wish, I wish, I could have seen more varied autistic representation growing up. A girl, perhaps. A girl who did speak, who spoke loudly (because she couldn’t modulate her voice) and at length (when something interested her) and at inappropriate times (because she couldn’t determine what times were appropriate). A girl who was an incredibly picky eater, maybe, or who avoided eye contact without realising it, who jiggled her foot all the time, who dreaded “making the rounds” to greet her relatives at birthdays. A girl who flitted from one all-consuming obsession to another.

Representation - varied, accurate, respectful representation - can help those of us adrift at sea to find an anchor. It helps us recognise ourselves.

Even if we already know our identity, proper representation helps us accept that identity. It’s well-established that negative/no representation has awful effects on self-esteem. When we see no one like us - or when we’re only ever the troubled sibling, never the heroic kid wizard - it sends a message. We’re not normal. We’re not welcome. We’re not heroes. We exist only in relation to those around us.

Autistic people are overwhelmingly portrayed from that “those around us” perspective. When we’re secondary characters, books often focus on how difficult we are to deal with for our relatives. When we’re primary characters, books often focus on how unusual, mysterious, and inspiring we are. We’re objects of fascination.

The thing is - we’re fascinating to others, maybe.

To us, it’s everyday life.

Skewed portrayals affect us, but they also affect how people see us. That’s a dangerous thing.

Public awareness of autism is far greater now than when I was growing up, which leads to more books featuring autistic characters. That’s a wonderful improvement, but it’s still important to note that those characters are overwhelmingly written, represented, edited, published, marketed, reviewed, and read by non-autistic people. It’s not surprising, then, that we’re often portrayed from that outside perspective, reduced to stereotypes, misconceptions, and props.

Similarly, Autism Awareness Month - observed in April each year - is overwhelmingly observed and publicised by non-autistic people and organisations. Some of the most prominent autism groups are run entirely by non-autistic people, and the things said about us in supposedly helpful awareness campaigns make chills run down my spine.

What about the disability rights saying “Nothing About Us Without Us”? However important true allies are, a group cannot be solely defined by outside narratives. We are here. We are talking. Verbal and non-verbal, all across the spectrum, all genders, all backgrounds, all ages.

And we’re being drowned out by others professing to speak on our behalf.

I’ve spent years cringing my way through April as a result of this kind of misrepresentation. This year, I wanted to do something different, something proactive and within my own community:

I decided to organise a month-long event discussing the state of autism representation in middle grade and YA literature.

The topic fascinates me from many angles - as an author of an upcoming YA novel with an autistic protagonist; as a reader of books with autistic characters; as an autistic activist interested in diverse representation; and as an editor of Disability in Kidlit, a website focusing on disability portrayals in children’s books.

More than anything, I wanted this event to be exclusively from the autistic perspective.

Together with the rest of the Disability in Kidlit team, I made it happen. Throughout April, we’re hosting Autism on the Page, featuring daily posts - reviews, articles, and interviews - where people with autism share their thoughts on autism representation.

Our hope is that it will help authors write more accurate and respectful characters, and will help readers, booksellers, and librarians recognise both the good and the bad portrayals. We want to effect change from the inside.

And maybe, that’ll help more kids down the line read a book and think,